Patients’ experiences of transitioning between different renal replacement therapy modalities: A qualitative study

2020 ◽  
Vol 40 (6) ◽  
pp. 548-555 ◽  
Author(s):  
Els Holvoet ◽  
Sofie Verhaeghe ◽  
Simon Davies ◽  
Gill Combes ◽  
Karlien François ◽  
...  
Keyword(s):  
Replacement Therapy ◽  
Sense Of Self ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Dialysis Unit ◽  
Home Based ◽  
Kidney Replacement Therapy ◽  
End Stage ◽  
Patients Experience ◽  
Care Requirements

Background: Different kidney replacement therapy modalities are available to manage end-stage kidney disease, such as home-based dialysis, in-center hemodialysis, and kidney transplantation. Although transitioning between modalities is common, data on how patients experience these transitions are scarce. This study explores patients’ perspectives of transitioning from a home-based to an in-center modality. Methods: Patients transitioning from peritoneal dialysis to in-center hemodialysis were purposively selected. Semi-structured interviews were performed, digitally recorded, and transcribed verbatim. Data analysis, consistent with Charmaz’ constructivist approach of grounded theory was performed. Results: Fifteen patients (10 males; mean age 62 years) participated. The conditions of the transitioning process impacted the participants’ experiences, resulting in divergent experiences and associated emotions. Some participants experienced a loss of control due to the therapy-related changes. Some felt tied down and having lost independence, whereas others stated they regained control as they felt relieved from responsibility. This paradox of control was related to the patient having or not having (1) experienced a fit of hemodialysis with their personal lifestyle, (2) a frame of reference, (3) higher care requirements, (4) insight into the underlying reasons for transitioning, and (5) trust in the healthcare providers. Conclusions: Care teams need to offer opportunities to elicit patients’ knowledge and fears, dispel myths, forge connections with other patients, and visit the dialysis unit before transition to alleviate anxiety. Interventions that facilitate a sense of control should be grounded in the meaning that the disorder has for the person and how it impacts their sense of self.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Ten-year trends in epidemiology and outcomes of pediatric kidney replacement therapy in Europe: data from the ESPN/ERA-EDTA Registry

2021 ◽  
Author(s):  
Marjolein Bonthuis ◽  
Enrico Vidal ◽  
Anna Bjerre ◽  
Özlem Aydoğ ◽  
Sergey Baiko ◽  
...  
Keyword(s):  
Replacement Therapy ◽  
Cox Regression ◽  
Patient Survival ◽  
Healthcare Providers ◽  
Resource Planning ◽  
Policy Makers ◽  
Age Related ◽  
Kidney Replacement Therapy ◽  
Over Time ◽  
Related Population

Abstract Background For 10 consecutive years, the ESPN/ERA-EDTA Registry has included data on children with stage 5 chronic kidney disease (CKD 5) receiving kidney replacement therapy (KRT) in Europe. We examined trends in incidence and prevalence of KRT and patient survival. Methods We included all children aged <15 years starting KRT 2007–2016 in 22 European countries participating in the ESPN/ERA-EDTA Registry since 2007. General population statistics were derived from Eurostat. Incidence and prevalence were expressed per million age-related population (pmarp) and time trends studied with JoinPoint regression. We analyzed survival trends using Cox regression. Results Incidence of children commencing KRT <15 years remained stable over the study period, varying between 5.5 and 6.6 pmarp. Incidence by treatment modality was unchanged over time: 2.0 for hemodialysis (HD) and peritoneal dialysis (PD) and 1.0 for transplantation. Prevalence increased in all age categories and overall rose 2% annually from 26.4 pmarp in 2007 to 32.1 pmarp in 2016. Kidney transplantation prevalence increased 5.1% annually 2007–2009, followed by 1.5% increase/year until 2016. Prevalence of PD steadily increased 1.4% per year over the entire period, and HD prevalence started increasing 6.1% per year from 2011 onwards. Five-year unadjusted patient survival on KRT was around 94% and similar for those initiating KRT 2007–2009 or 2010–2012 (adjusted HR: 0.98, 95% CI:0.71–1.35). Conclusions We found a stable incidence and increasing prevalence of European children on KRT 2007–2016. Five-year patient survival was good and was unchanged over time. These data can inform patients and healthcare providers and aid health policy makers on future resource planning of pediatric KRT in Europe.

scholarly journals Pregnancy and delivery in women treated with renal replacement therapy: A literature review

2021 ◽  
pp. 86-90
Author(s):  
V. Medved ◽  
L. Bulik
Keyword(s):  
Kidney Disease ◽  
Replacement Therapy ◽  
Perinatal Outcomes ◽  
Published Data ◽  
Perinatal Complications ◽  
End Stage Kidney Disease ◽  
Dialysis Therapy ◽  
Pregnancy And Delivery ◽  
Kidney Replacement Therapy ◽  
End Stage

Abstract. The problem of pregnancy and delivery in women with end-stage kidney disease is becoming increasingly important, and the number of such women who are pregnant, receiving kidney replacement therapy, is growing every year. Improvements in dialysis therapy have led to improved obstetric and perinatal outcomes, but the risk of various obstetric and perinatal complications remains extremely high. In this review, we analyzed recently published data on management and outcomes of pregnancy in women with end-stage kidney disease receiving dialysis.

scholarly journals Pain self-management experiences in haemophilia patients: a qualitative study

2018 ◽  
Vol 5 (1) ◽  
pp. 76-82 ◽  
Author(s):  
Masoume Rambod ◽  
Farkondeh Sharif ◽  
Zahra Molazem ◽  
Kate Khair
Keyword(s):  
Pain Relief ◽  
Qualitative Study ◽  
Lived Experience ◽  
Sense Of Self ◽  
Healthcare Providers ◽  
Phenomenological Approach ◽  
Complementary Therapy ◽  
Self Management ◽  
Self Awareness ◽  
Structured Interviews

Abstract Background: Pain management can prevent long-term burdens in haemophilia patients and improve their quality of life. The present study aimed to describe and interpret pain experiences in haemophilia patients, focusing on pain self-management in their lives. Methods: This was a qualitative study undertaken using a hermeneutic phenomenological approach. The study involved 14 haemophilia patients referred to a haemophilia clinic affiliated to Shiraz University of Medical Sciences in Iran. Data were collected using semi-structured interviews and field notes. Thematic analysis with van Manen’s methodological framework was applied. Data analysis was performed using MAX. QDA qualitative software (2010). Results: Four themes emerged: a sense of self-awareness and recognition of pain and the factors that affect it, the ability to control and self-manage pain, gradually achieving self-efficacy in pain control, and using cognitive and spiritual strategies for pain relief. Conclusions: The study highlighted the essence of the lived experience of pain self-management and generated its linguistic description. By providing complementary therapy interventions, healthcare providers and family members could increase patients’ self-awareness, recognition, ability to self-manage and control pain effectively, and competence in developing cognitive and spiritual strategies for pain relief.

scholarly journals The experience of being a mother with end stage renal disease: A qualitative study of women receiving treatment at an ambulatory dialysis unit

PLoS ONE ◽  
2021 ◽  
Vol 16 (9) ◽  
pp. e0257691
Author(s):  
Miriam Álvarez-Villarreal ◽  
Juan Francisco Velarde-García ◽  
Cristina García-Bravo ◽  
Pilar Carrasco-Garrido ◽  
Carmen Jimenez-Antona ◽  
...  
Keyword(s):  
Lifestyle Changes ◽  
Structured Interviews ◽  
Dialysis Unit ◽  
Genetic Transmission ◽  
Purposeful Sampling ◽  
Field Notes ◽  
Stage Renal Disease ◽  
End Stage ◽  
Experience Of Illness ◽  
Taking Care

Background End-stage kidney disease (ESKD) has considerable effects on the quality of life, impairing daily activities and leading to lifestyle changes. The purpose of this study was therefore to explore the experience of motherhood and taking care of children in women with ESKD. Methods A qualitative exploratory study was conducted based on an interpretive framework. Participants were recruited using non-probabilistic purposeful sampling. In total, 14 women with ESKD were included, who were treated at the dialysis unit of a Spanish hospital. In-depth interviews (unstructured and semi-structured interviews) and researchers’ field notes were used to collect the data. A systematic text condensation analysis was performed. The techniques performed and application procedures used to control trustworthiness were credibility, transferability, dependability, and confirmability. Results Three themes emerged from the data. “Coping with being a mother” described how women are faced with the decision to become mothers and assess the risks of pregnancy. The second theme, called “Children and the experience of illness”, highlighted the women’s struggle to prevent the disease from affecting their children emotionally or disrupting their lives. The third theme, “Fear of genetic transmission”, was based on the women’s fear of passing the disease on to their children. Conclusions Deciding to become a mother and taking care of children represents a challenge for women with ESKD, coupled with the losses in their lives caused by the disease. These findings are only relevant to women on dialysis.

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